Six-year-old boy's struggle to hear again after discovering 'massive' tumours

By Sarah Stewart| 1 year ago

Hospital chairs. I’ve gotten used to them in my journey as a mum to Jacob, eight.

Today’s particular chair is situated in a new private hospital in the north of Sydney. Typical of aesthetically pleasing furniture this chair is lacking comfort. You can’t have it all. I sit, I wait. I drink tea, casually chat and at times, I attempt to read from my iPad, whatever is the latest romantic/mindless crap novel I am currently indulging in. It’s pointless, my mind is elsewhere - focused on that little guy currently on the operating table with so much to gain from today’s surgery.

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The journey that brought us here started, in retrospect, from another hospital chair. My son, Jacob, was 9 months old and I recently had become a single mum to him and his sister Lucia, three. Both were currently undergoing surgery for grommets. Lucia’s second set and Jacob’s first. He would go on to have another two sets inserted, tonsils and adenoids out and frequent ear infections.

Fast forward five years and I have finally thrown in the towel with our existing ear, nose and throat (ENT) specialist and found myself another one. The new one came highly recommended, but I was warned bedside manner wasn’t her strong point. After our first meeting two things became very clear; 1. The rumours were true, she was as cold as a Cullen (Twilight analogy) and 2. My son’s previous ENT had missed a lot. A real lot.

“How was his last hearing test” she quizzed.

“Um, he’s never had a hearing test” I replied.

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Cue cold as ice stare followed by an audible sigh. Twenty minutes later we were sitting in a room with a sound proof booth, my little guy with headphones on and a buzzer in hand. Immediately after I was told Jacob had mild hearing loss in his left ear. Nothing major “Dr Cullen” assured me – “we will just need to get him a hearing aid."

I smiled, nodded… then it hit me. What? At this point I was certain if anyone needed a hearing aid it was me. Surely not Jacob. Day care workers frequently commented on his beautiful vocabulary. He spoke on level that far exceeded his age.

Which took us to our next chair at the Children’s Hospital for a CT scan – “let’s just explore why he has hearing loss” she said. Turns out it showed what “could” be a cholesteatoma. Of course, I went straight to doctor Google. Big mistake.

Ironically, “Dr Cullen” for all her coldness had become my greatest comfort and now with this diagnosis, she was wanting to hand me off to another doctor. A professor.

Enter Professor Marvel (Captain Marvel nod). She was statuesque, comforting, calm and warm. She immediately ordered an MRI. Two public hospitals, failed “MRI training” – like a five-year-old boy was ever going to stay still in an MRI machine for thirty minutes - and a four months later the MRI was clear. Excellent, no sign of a tumour.

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Sure, he needed a hearing device at school, but it was only mild hearing loss.

Which brought me to another hospital chair. One I would sit in with my 6-year-old cradled like a baby, vomiting and feverish. He had what would later become known as the “Australian Flu”. We sat there for eight hours. The next day, fluid was seeping from both ears, the drums having perforated. No complaints from Jacob, as usual he was a trooper, his pain threshold exceptionally high.

Six months later, his left ear drum hadn’t repaired itself, leaving a hole we now need to patch.

It was to be a pretty easy procedure I was told. We just patch it up. So, I sat in an aesthetically pleasing but bottom numbing chair for three hours. After three hours, I started to pace. I was then told the professor needed to chat to me, on the phone from the theatre. Very calmly she told me “Sarah, he has a cholesteatoma. It's massive and it’s taken over his ear."

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"Don’t worry” she said. “If I can’t save the hearing ossicles we can get him a hearing aid."

"Wait, what do you mean?” my brain was slowly catching up.

“Sarah, I don’t think I can save his hearing."

Seven hours later my little guy previously with mild hearing loss was now deaf in that ear.

As always, he came out of it coping better than could be expected. His biggest complaint was the pressure ulcers restricting his ability to walk, a result of seven hours in surgery.

Over the following months Prof Marvel insisted we would go back and try to restore his hearing in a year. Till then, Jacob received a hearing aid – bright blue – chosen by him and worn with pride.

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Which brings us to today. My hopes and prayers channelled through to Prof Marvel and a tiny device. The 0.8mm Dornhoeffer implant she is currently attempting to insert in Jacob’s ear.

In theory, this will restore his hearing to some degree. Ideally, legal hearing.

Three hours later I see Prof Marvel strolling towards me. Huge grin on her face. "It looks good Sarah. I’m confident it will be a good outcome”.

So, that’s what I am focused on today, not the second part of that conversation that informed me there was another cholesteatoma found in his ear which means we need to operate again in six months to ensure there is no additional tumour growing.

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We have a hearing test planned in six weeks to give us a better understanding of how much he is now hearing. And like all the times before, I will sit in that waiting chair – comfortable or not and patiently await those results.

Till then, I am in recovery with my little guy – not too old to want mum lying beside him, snuggling closer. It’s nicer here than in any chair.